September is National Pain Awareness Month, something that I didn’t know existed, but I’m here for it. This is just a little stream of consciousness about my own struggles with pain.
How do you know when to seek help?
Painsomnia—it’s not an actual medical term, but anyone in the chronic pain community knows exactly what you’re talking about.
“How much pain for how long is OK before it’s acceptable to just give up?”
Ever since finding the website the Mighty, I’ve had so many more instances of acceptance when it comes to my chronic pain. When you’re diagnosed so young—20-years old is pretty young for a life-long condition in my book—it’s easy to feel so alone. Unknowingly, you start to isolate yourself from friends and family and start to feel like no one else could ever understand how you feel.
The other day I came across an article on the Mighty titled: “18 Taboo Topics About Chronic Illness You’re Not the Only One Having.” It felt as if the dark and gloomy sky had opened up and the sun starting shining down on me. I was finally being heard. Here are some of my favorite topics that come directly from the Mighty community:
“I actually look forward to procedures that require anesthesia because I get to go right to sleep. That’s so sad to me.”
“[I worry] nobody will love me because I’m sick.”
“I think about how much I dread going to the doctor. I hope I have enough symptoms to have them believe me and take me seriously. But I don’t want enough symptoms and hurt going on to warrant a crash. It’s complicated.”
“I think pretty regularly that I’m a burden to everyone around me, and that if only I wasn’t sick. I have been known to think I would be better not being here, not that I want to die, just that my life isn’t exactly worth it because I don’t really do anything. I’m ‘failing.’”
“My taboo thoughts have always been that I hope my tests come back showing something. More clues as to what is going on or why it is happening. Most of my test results come back normal or just ever so slightly off. Nothing is ever off the charts or crazy enough to get the attention I feel I need.
“Any drug that makes me sleepy or slightly ‘stoned’ I love.”
“I feel frustrated every single day. Because the person I am now can’t even do 10 percent of the things I could do before I was sick. I’m constantly irritated and grouchy due to frustration.”
I no longer felt so alone. I’ve had some version of these thoughts ever since I’ve been sick. These aren’t things I can talk about with other people, especially people who have no idea what you’re going through. And to the outside world, I have a wonderful middle-class life filled with a supportive family, successful friends, and financial stability. But if you take the time to look closer, you would see that those successful friends don’t have time for you and that financial stability comes from your parents because you’re unable to work and provide for yourself. We try to put up a front, but on the inside our thoughts are dark and lonely. Knowing there are people out there that share your thoughts—share your pain—the world doesn’t feel so alone anymore.
It’s Fibromyalgia Awareness Day! I was diagnosed six years ago when I was still in college. Fibromyalgia impacts my entire life: physically, emotionally, and mentally.
There is no cure. It only gets harder. All we have is to raise awareness and to get people to understand and listen. No I’m not “lazy,” or “faking it.” Just because we don’t look sick on the outside doesn’t mean we aren’t a complete mess on the inside.
I thought that this we would be a nice way for you to get to know me in relation to chronic illness. This might not be for everyone but I thought it might interest someone.
I got another piece published on The Mighty! If you’ve never heard of The Mighty, they’re a website that focuses on articles and stories about disabilities, disorders, diseases, mental health. I’ve been helped immensely from the site, comforted in finding people just like me: trying to survive and have a life despite my many obstacles. Definitely check it out! But first, here is the piece I wrote about how my chronic pain took away the great love of my life: dance
One of the biggest joys of living in Southern California is obviously the weather…and Disneyland. We don’t really have specific seasons. It’s pretty much 75°F all year round. And because we are still in a severe drought, it’s very dry. The summers can get pretty hot, but I’ll take it for a winter in shorts and a T-shirt. Ideal weather for someone suffering from chronic pain? For the most part, yes.
Something about me: I’ve been sick for about nine years. It all started New Year’s Eve 2008, halfway through my senior year of high school. I had my very first migraine and from that day on, I’ve had some type of headache every day. Every day for the past nine years. Then in the middle of college, I was diagnosed with fibromyalgia. Strange word, right? Fibromyalgia is a disorder that causes widespread pain, fatigue, memory issues, and basically anything else that can go wrong with your body. One way to look at it: my body feels like a gigantic bruise. My headaches only added to the problem. I spent a lot of time stuck in bed. I STILL spend a lot of time stuck in bed.